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Baby Loss Awareness Week

SOFT UK is proud to be a member of the Baby Loss Awareness Week Alliance 2019.  From 9th-15th October we will remember all the babies lost during pregnancy, at birth and in the neonatal period.   Sadly the  majority of pregnancies affected by Trisomy 13 and Trisomy 18 still end in be...

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SOFT Northern Ireland Family Day 2019

On Saturday 5th October we were delighted to return to Northern Ireland, for the first time in 6 years, to spend the day with our families there.   It has been some time since we have had a Northern Ireland Rep, so our Trustee Liz Egan spent the summer trying to make contact with families in t...

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Pre natal Screening Research

As part of his PhD research, Emyr Wile would like to obtain parents experiences of the NHS prenatal testing process.   He is looking to study the experiences of parents who received a low or high-chance result following combined/quadruple  screening and who decided to undertake or reject ...

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SOFT UK Family Meets

Families in the South West took advantage of the new SOFT UK Family Meetings to meet together in Bristol!  Thankyou so much to Jay, Cali's mum for organisating the first of our local meetings.  It was great to be able to meet up informally and spend some time together in a fun, accessible ...

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Scotland Family Day 2019

The sun was shining for our annual Scottish Family Event on 14th September 2019. Ten families attended the event, including many of our long-term members, some returning families and one new family.  We were sad to be missing some of our regular families this year and send best wishes to those ...

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Family Day 2019

SOFT UK held its 2019 annual family day at the Marriott, Northampton on May 11, with Family Stories the chosen theme for this this year’s highly successful event. Starting with teas and coffees, the Family Day provided a great opportunity for families to meet up, catch up with latest news and...

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SOFT UK Annual Awards Winners

This year we received many nominations for our Annual Awards scheme. The SOFT UK Annual Awards recognise the efforts of professionals working with families affected by Trisomy. The nominations sent to us were heartfelt thanks from families and as always, its very hard to choose between them. However...

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Summer 2019 Newsletter

Our summer 2019 newsletter is here!  Packed full of content from the results of our SOFT UK Research Project, to our Family Stories section and news from our Family Days! Its almost the weekend, grab yourselves a cuppa and put your feet up!             &nb...

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Research Project Results Are In

    PHD Student, Helen Foster-Collins, undertook a piece of research to try to better understand what kind of support is required for families who are affected by Trisomy 13 or 18 from clinicians, SOFT UK and other support services.    The project was carried out using qualit...

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New Arrivals

SOFT UK welcomes new Rainbow Babies   Sonia and Sandeep Sankoli welcomed Jovin on 31 st May, a long-awaited little brother for Dhian who  had Trisomy 13. Sonia and Sandeep do an incredible amount of volunteering for SOFT UK, from fundraising to supporting other families.   &n...

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Making a Regular Donation to SOFT UK!

One of the things families ask us most often is how they can help SOFT UK! Many people want to give something back to SOFT UK after they have received information or support from us, or after we have supported a family member or friend.   However life can be busy!  Its not always possibl...

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Language Matters

SOFT UK Trustee Alison Pearson blogs for Public Health England  Alison was one of 2 mums asked by Public Health England Screening to talk about the importance of the language that health professionals use when communicating with parents and parents-to-be about conditions like Edwards’ sy...

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Celebrating Volunteers Week 2019

SOFT UK would like to say a massive THANKYOU to all our Volunteers during Volunteers' Week 2019.  Volunteers’ Week is our chance to celebrate the huge range of people who give their time to SOFT UK in so many ways. SOFT UK is a volunteer led charity and our volunteers are at the very he...

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New SOFT UK Administrator

We would like to say a great big SOFT UK welcome to our new Project Administrator Marlene Graham. Many of you will know Marlene already as she has been a member of SOFT UK for many years.  You may also have come into contact with her if you fundraise for SOFT UK as she manages our fundraising ...

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Trisomy 18 Research Project

Researcher and long time friend of SOFT UK Meghan Linscott is undertaking a piece of research into the mental health impacts of parents of children with Trisomy 18.  Trisomy 18 (also known as Edwards Syndrome) affects approximately 1 in every 1,500 pregnancies. Trisomy 18 causes physical and...

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National Lottery Community Fund Award

We are absolutely delighted to announce that we have been awarded £7401 by the National Lottery Community Fund to develop our Volunteering scheme.  Volunteers are at the heart of everything we do at SOFT UK.  A member-led charity, we are governed by a voluntary Board of Trustees.&nb...

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Trisomy Awareness Month 2019

March is Trisomy Awareness Month and in 2019 SOFT UK has exciting news to share!  After many months of hard work, we are delighted to launch the FAMILY STORIES section of our website.  For 25 years families have been telling us that what matters most to them is being able to connect with ...

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Cali Rocks Rare Disease Day

Regular SOFT UK blogger Jay has shared her popular Living with Cali blog with the world for Rare Disease Day 2019.  The 28th February is international Rare Disease Day, which focuses on highlighting the experiences of patients with Rare Conditions to the public, the medical community and to po...

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World Birth Defects Day - March 3rd

SOFT UK  joins nearly 100 national and global organizations in observing the fifth annual World Birth Defects Day on March 3. This international event was launched in 2015 to raise awareness of this serious global problem of birth defects and urge more surveillance, research, prevention, and c...

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SOFT UK Join Wonderful

Following the announcement about the closure of BTMyDonate, our fundraising platform provider, we went on a search for the best replacement for them.  A provider that is reliable and maximises donations, so that the money you donate actually reaches us!   A little research led us to the ...

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Winter Newsletter

I hope you are all surviving this wintry weather!  If you're staying inside out of the cold, the Winter Newsletter will provide you with plenty to read with a hot cuppa! This edition there is plenty SOFT UK News as always.  Read what we've been up to in the past six months and what we ar...

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Genetic Alliance Guest Blog

This week SOFT UK is featured on Genetic Alliance UK's guest blog.   Trustee Gareth Glendinning blogged about his experience taking part in training for health care professionals. As part of the rollout of NIPT testing in the NHS in England, Gareth took part in the making of a training video a...

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Campaigning success for Together for Short Lives

Together for Short Lives are celebrating the success of their campaign to improve resources for Children's Palliative Care in England.  Following a December announcement of an increase in the Children's Hospice Grant from £11 million to £25 million, giving it parity with funding fo...

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SOFT UK Annual Awards 2019

SOFT UK is delighted to invite our members to once again nominate for our Annual Awards for 2019. We award two prizes each year, to professionals working within the UK who are taking those extra steps to provide exemplary care for families affected by Trisomy.    Oustanding Clinical Car...

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SOFT UK Christmas Appeal

Give a little back this Christmas....... Christmas is a time of giving, a time to celebrate our loved ones and a time to reflect amongst the chaos.  This Christmas why not give a little back? And encourage your friends and family to do the same.  Every year hundreds of families in the U...

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Living with Cali Update

The next installment of our popular Blog 'Living with Cali' is up over at http://www.soft.org.uk/living-with-cali/enduring-admissions

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SOFT UK Christmas Cards

We have a small number of packs of our popular SOFT UK Christmas Cards left over from last year! Our Christmas cards were designed by SOFT UK Families in 2017.  They come in packs of 10 assorted cards. Suggested donation is £5 plus a postage charge, which will be calculated depending ...

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APPG Children who need Palliative Care Report

Ministers must meet their commitment to dying children, MPs report says Together for Short Lives Press Release 21st October 2018  England’s most vulnerable children are not able to access the full range of care and support that the government has committed to, a new report by a cross-pa...

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SOFT UK Race Team Announcement

SOFT UK announce successful candidate for VirginMoney London Marathon 2019 SOFT UK were fantastically lucky to secure a Charity Ballot Place for the VirginMoney London Marathon 2019.  We had our highest ever number of applications for the place.  We were incredibly touched by many of the ...

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Scotland Family Day 2018

    On Saturday 29th September, Trustee and Scotland Coordinator Liz Egan welcomed our Scottish members to the Glynnhill Hotel in Renfrew.          Our Family Days are an opportunity for families to create a support network with other families affected by ...

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SOFT UK & Jeans for Genes

SOFT UK Trustee Alison Pearson spoke to Heart Radio, to publicise the work of SOFT UK, as part of the annual Jeans for Genes campaign.  To read her full interview visit: https://www.heart.co.uk/exeter/news/local/devon-mum-wants-more-awareness/

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Genetic Alliance UK Conference

    SOFT UK Chair Jan Fowler and Trustee Alison Pearson took the floor at the Genetic Alliance UK annual conference on 25th September.              The conference brings together professionals from all sectors working with genetic conditions....

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World Birth Defects Day 2019

SOFT UK has signed up as a partner to World Birth Defects Day 2019.  World Birth Defects day has been set up by an array of international agency partners, to encourage improve surveillance of Birth Defects. Their belief is that a lack of reliable statistical data on rare birth defects prevents...

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Summer Newsletter

After the longest wait in history, the SOFT UK Newsletter is finally here! Its absolutely packed full of content this edition, so please give it a read. I would like to say a huge thankyou to all the contributor's this edition, many of whom have waited patiently while I learned the ropes of my new...

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Jeans for Genes Day 20 September 2018

Jeans for Genes Day is the highly successful annual fundraising event from Genetic Disorders UK.  It turns a simple fundraising idea into an epic income generator for charities like SOFT UK, working with families affected by genetic conditions!  Jeans for Genes Day can be run in any work...

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SOFT UK Training for Professionals

SOFT UK Trustee John Capper has been working with the Chesterfield Royal Hospital to provide training for professionals working in their Antenatal Services.  In July he gave a presentation to a group of obstetricians, paediatricians, midwives sonographers and other maternity staff.  John p...

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SOFT UK Professional Awards

Every year SOFT UK present awards to professionals for providing Outstanding Clinical Care to families affected by Trisomy 13 or 18.  This week Chris Rose, Founding Trustee, travelled to Wales to present this award to midwife Kathryn Hennessey. Kathryn, who works as a midwife at the Royal Gla...

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Scottish Family Day 2017

We started the day with tea/coffee and our usual catch up whilst the children settled into the crèche. We are so lucky to have the same crèche and workers every year. They all know our children so well and the children really look forward to spending the day with them all.   ...

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SOFT Newsletter Winter 2017

Welcome to the SOFT UK Winter Newsletter. Due to circumstances beyond our control, we are unable to offer our newsletter in it's usual format. We wanted to be able to give you something, so rather than not have a newsletter at all, we have worked exceptionally hard this week to create a short, onlne...

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RAISE FREE FUNDS FOR SOFT WHILST SHOPPING ONLINE!

HO HO HO! #Christmas is on its way so get shopping, booking or ordering online @GiveasyouLive and start piling up those free funds for us.  SHOP NOW!

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New Volunteer Role!

HELP REQUIRED!Are you a student or budding enthusiast with website design experience/knowledge? Our beautiful new website is live but still needs refining! We would love to hear from anyone who could spend a bit of time helping with the development of our new website. If this is you, or you know som...

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